Friday, January 6, 2012

Lupus nephritis - biopsy for all?

Here's another interesting article from Medscape News - reporting about the the first guidelines ever developed for the management of lupus nephritis. The recommendation is that physicians biopsy all patients who present with clinical evidence of active disease (lupus nephritis, that is), classify the disease stage according to the International Society of Nephrology/Renal Pathology Society classification system, and manage the disease on the basis of this classification.The guidelines were presented at the American College of Rheumatology (ACR) 2011 Annual Meeting.

While your kidney has the ability to repair itself, the biopsy results, in my case, are different almost every time, and sometimes, even inconclusive.Thank goodness it's not a major surgery, a day surgery, in and out, and minor discomfort.Is this the first time your protein has shooted? How about your creatine and albumin?

I am surprised however, to hear that you are still doing 24 hr urines. Is it technology, but my nephrologist can get a protein count in a urine sample...

The highst my protein went, was when I reached 25 weeks. at 9 times the level it should be, they performed an emergency c-section...

Courage, you are right on the mark when you say you can't ignore symptoms, managing lupus is all about being proactive!!

Hello, I am doing some research and wanted to find out if you have ever been bitten by a tick before. I'm sorry it seems like an odd question but I've read about Lupus being caused by Lyme disease in some people.

Thanks for sharing, everyone! Good to hear about your personal biopsy stories. I think I'm in the clear this time, but I'm so glad you all have armed with the info I need for the next time!

To answer your questions - Glynis - I've always spilled protein...and we've always just watched it to make sure it wasn't too much. This time, it was just way more than it normally is. Good news is that that Cozaar is working - as all of my levels are looking good. And re: the 24 hour tests - most of my docs agree that my samples tend to be screwy - sometimes indicating higher than normal readings. so they just do the 24 to get a more accurate reading of what's going on. I don't love them, of course - but most of the time, they come back normal.

And yes, Karen is THE Karen in Ottawa. She's great, eh? :)

To Relief with Oils - It's not a crazy question at all! My personal experience with lupus doesn't seem to involve a tick bite, but if you shoot me an email at sara@despitelupus.com, I'd be happy to connect you with a couple of people who have been. One of them is actually writing a book about his experience with lupus and the tick bite, and another contact's lupus was ignited by a spider...

Hi everyone! This post caught my eye. I have Lupus nephritis, I was diagnosed with lupus at 8 and the kidney trouble began when I was 20. 5 years later I am off Cellcept and for having lupus, I am pretty healthy. My husband and I are hoping to start a family soon and we recently say down with a high risk OB to talk about everything. He threw a ton of numbers and facts at me, and it was completely overwhelming. He said that at some point during pregnancy I would get Pre-eclampsia. I was just wondering about other peoples experiences with pregnancy and Lupus nephritis. I know everyone will have different experiences but I am still curious. If anyone could share their experiences, I would more than love to hear about it!

And Nerdgirl - So glad you're blogging! I'll be sure to check it out - thanks for reading the book and the blog!

Glynis - RE: a UA vs. 24 hour urine - my understanding is that my UA's can sometimes indicate a false positive or are inconclusive...and ordering a 24 hour test is just more comprehensive and accurate...at least in my case. Interesting to hear about the inconclusiveness of your biospies. Kind of like my UA tests...but you had to go through a lot more trouble!! And, yes, my understanding is that it's SLE that was brought on by the bites. Certainly not common, but I've crossed paths with several individuals. Interesting, huh?

And RJ - glad you wrote! I personally didn't experience pre-eclampsia, but I do know that it is common. For all of the precautions my high risk ob and I took, I had very uneventful, seamless pregnancies. Both of them (pregnancies and babies) were just perfect! However, the stats, facts, and figures that I heard when my husband and I were contemplating the first pregnancy were very overwhelming too. So much so that after the consultation with the high risk OB, I said something like, "Well I guess we won't be doing that!" But upon further research, discussions with my doctor(s), and a lot of soul searching, we decided to move forward. I'd be happy to talk further with you - feel free to email me at sara@despitelupus.com. Thanks!

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.